Wittesea's story

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Wittesea's story

Postby Wittesea on November 13th, 2002, 12:59 am

Hello!
I am 27 years old, married, female, disabled due to severe social anxiety and panic attacks, and I think I have BFS. My doctor has diagnosed me as having Essential Tremor, but I'm pretty sure that he is wrong. I think that everything started in the fall of 2001. I was feeling really bad, I pretty much felt like I had the flu all the time. I went to the ER a few times and to my doctor, but they said nothing was wrong. I got a flu shot in November of 2001 and everything went downhill after that.

I continued to feel sick every day, and finally in January of 2002 I went to the ER again and they admitted me, saying I had pancytopenia (extremely low red and white blood counts). However they couldn't find the cause. After many specialists they finally decided that it must be caused by my medication. I was on 500mg of Depakote a day for bi-polar. This is considered a low dose, and all of the blood tests that I had had over the months that I was feeling sick always showed my Depakote levels as being normal.

They took me off of the medication, and while I was in the hospital for a week they also gave me some pretty strong antibiotics 'just to be sure' was their reason. I went home and I was feeling better.

In February of 2002 I started to notice that I had muscle twitches in my legs and feet. Not outwardly visable, but I could definately feel them. I didn't think they were serious, and I just ignored them. Over the next few months the twitches got stronger and happened more frequently, I asked my doctor about them and I was told that everyone gets twitches. So I started asking everyone I knew (friends & family) how often they got twitches. Everybody I asked said that they got twitches once in a blue moon. So I went back to the doctor to try to explain that I was getting twitches in my legs nearly every day. I was told not to stress, everyone gets twitches.

So I tried not to stress, but I have anxiety, telling me not to stress is like telling my dog not to shed, it's impossible to do. I spent the summer twitching and stressing and twitching some more.

One morning in September 2002 I woke up and my thumb was twitching and moving. I was pretty freaked out, but of course it was a Saturday, and the doctors office is closed on weekends. I really didn't want to go to the ER or the walk-in clinic just because my thumb was moving. So, I just tried not to stress. On Sunday my husband and I went to visit my family, and my thumb started moving again while we were there, and the whole family noticed it, and they all freaked out, so I started freaking out, and then my thumb started to twitch some more, and then my leg started to twitch (thankfully they couldn't see that though, or they would have freaked some more). So that night I went home freaking and stressing and freaking some more.

On monday morning I called the doctor and explained it to the receptionist. She felt it was important enough to squeeze me in that day. So on Monday afternoon I went to see the doctor. I was freaking out, I was sure that I had Parkinson's or some other disease. So I told the doctor about my thumb, and he said it was Essential Tremor, no big deal, stop stressing (yeah right). I went home and started looking up ET on the web. I joined a few ET message groups. I felt less stressed.

My legs and feet continued to have twitches and an occasional cramp, and my hands would twitch once in a while. I really didn't see a tremor or a lot of movement, but the doctor said ET, so I just went with it. I started to notice though that my 'ET' symptoms were really nothing like the symptoms of other people on the ET boards, so I started doing some more ET research. Nothing I read matched what I was feeling. Eerything I read talked about rhythmic movements, which was not what my thumb was doing, and nothing talked about twitching.

So I started freaking again, and I started some internet research. I came across some message boards for neuromuscular disorders and started reading the posts. One of the posts talked about twitching and occasional jerks, and exercise intolerance, and it had a link to aboutBFS.com. I started to read some posts and they all explained EXACTLY what I was going through. The twitches, occasional body jerk, exercise intolerance (I had thought it was completely normal to to have my legs shake and feel numbish and painful after exercising), and I was always told I was crazy when I tried to explain to anyone how sometimes when I lay down I can feel my pulse moving through my whole body, and anytime I had tried to explain that I felt weak and my whole body felt drained, I was told that I was in a depression.

Until I found this site I was completely convinced that I was dying from some illness, either that or I was crazy and needed to admit myself to the nearest psych ward. I am now pretty sure that last year I had some type of flu or other infection which triggered my immune system to kick into overdrive. I think having the flu shot made it worse, and the 'just in case' antibiotics killed whatever infection it was, and I think that I have BFS and not ET. When I read "BFS in a nutshell" it was like reading my own medical file. Since I have (mostly) stopped freaking out and stressing about dying or being crazy, my twitches and other symptoms have subsided, but they are still there. I am trying to find a decent Neurologist that accepts my insurance so that I can feel completely relieved.

I am so glad that I found this site. Thanks to all for the great information here, it is such a relief.
Last edited by Wittesea on August 9th, 2006, 8:52 am, edited 1 time in total.
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me too!

Postby jblack on November 15th, 2002, 7:23 pm

Karen -- you just posted one i never mentioned and haven't heard anyone else here mention -- the feeling of being able to feel your whole pulse all throughout your body when you lay down! I have that often. My wife can even feel the bed shake sometimes when we're falling asleep. Strange it seems to me that my blood pressure is actually normal. If I hold a newspaper, you can see it move in time with my pulse! Anyway, it always makes me feel better to find out that someone else (who also doesn't have a fatal neuromuscular disorder!) shares a symptom! Hopefully you feel the same ;-)

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Almost A Carbon Copy

Postby Gentle Male on December 13th, 2002, 12:03 am

HI- although my Neuro hesitates to diagnose me, my symptoms seem to be the same as yours including the pulse through the body and excercise intolerance. Also constant vibrations internally. Anyway started twitching this past July, thumb tremors, jerking movements particularly when I close my eyes to rest. Had one EMG, EEG Blood tests all normal. Just as a side note I am on a low dose of Neurontin 300mg/ day and the twitches, tremors and vibrations have reduced greatly, to the point that I am not scared of them. I think the Neurontin also helps my anxiety.

Nobody believed me and thought I was crazy, then attributed it all to stress. Maybe so but its real. I freaked out too, but no more. Anyway good luck and I hope things work out for you. :) Gentle Male
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Postby Joanne on December 13th, 2002, 9:46 am

Your sx sound very similiar to me also. It is aways comforting to see other with similiar sx. You are in the right place. I am curious though...has your thumb ever had a tremor in it after using it for awhile...my finger twitches are the once that have always make me freak out, especially the ones that wiggle back and forth.

Gentle Male- I noticed you stated you have thumb tremors, is it after using the muscle for a while or all the time?

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Postby Wittesea on December 13th, 2002, 10:38 am

Joanne,
If I do anything with any muscle that is either strenuous(sp) or repetative, then I get twitchy, which then brings on a kind of tired feeling in that area. When I get twitches in my hands or fingers it usually causes at least one of my fingers to move on it's own. Back and forth, up and down, side to side depends on which muscle is twitching.

If I were you I wouldn't worry to much about finger wiggles, I get them often. I will admit thet they are pretty annoying and can freak me out sometimes, but I am pretty much assured that it's nothing more than a simple twitch.

Good luck:)
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Postby Gentle Male on December 14th, 2002, 1:33 am

Joanne, my thumb tremors happen sometimes after excercise, lifting weights, or when I have had a tight grip on something. Sometimes for no reason at all. I just look at it now and tell it to stop. It use to do it for days at a time intermittently and then the other right hand once the left one stopped. The first half of my forefinger tremors too. I found that all of this feeds on anxiety. Something like that old Star Trek Series where the aliens grew stronger when there was hatred on board the ship, and laughter weakened them. Try to reduce anxiety and feel mentally better and this thing may disappear.

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Postby Arron on December 14th, 2002, 10:21 pm

Wittesea and the other's posting about similar body jerks, the body moving with your pulse, tyremors and shaking, exewrcise intolerance and so on.. I too have ALL of that for what that's worth. It's nice (even for me, a veteran of this crap) to know other's experience what you are experiencing and are ALL doing fine, except for maybe some anxious moments, but NO crippled people, NO ALS, NO Parkinsons, NO one dying and no one having anything major become of all of this. That my friends is the bottom line. It is benign, although it can scare the crap out of you at times. hang in there everyone! "We'll" be just fine... :-)
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